Hi, thank you for this reply, it is so helpful.
Yes I had 4 weeks of radiation with boost treatments at the end. The doctor did recommend AI which I've only been on for six weeks. Not sure how it will go, or how long I will be on them .
In retrospect if I knew them what I know now, I would have had a DMX and not had to worry about these AI side effects. I just thought stage 0 DCIS was an early catch and per mds would be fine.
I did take a test CTS 5 test meant for after 5 years AI treatment (obviously I just started AI) to assess reoccurrence 6% intermediate risk.
The Predict test excludes DCIS patients as you know, but I took it anyway.
You are right, the grade 3 of the 14 mm tumor puts me at a higher risk.
No one has a crystal ball but I sure would like to take the test you listed to really understand the risk.
I'm 68 my mom died at 74, I want to live my last years feeling good enough to watch my grandkids like I was and am doing.
I than God for this group as you all understand the unpredictable nature of our personal risk of reoccurrence.
Yes I did talk in depth with oncologist, who assures me we try this drug first, if problems occur, we try another.
Thank you again for listening and responding with pertinent information.
I wonder if I should still take the test above, even now after treatment (?)
I want to first address the test I talked about (PreludeDX). It is used to forecast reoccurrence with and without Radiation Treatment. You have already had radiation, so it would not be used for decision-making but rather to provide helpful information. It's only done for DCIS patients like you and me, so you do fit the parameters for requesting this test. Knowledge is power!
"DCISionRT is easily ordered by your breast care doctor. An order request can simply be faxed by your doctor’s office to PreludeDx. Our Care Team will take care of locating your original biopsy or surgical specimen and provide results to your doctor within 2-3 days from receipt—no additional biopsy or surgery is required."
In my case, PreludeDX was ordered by my radiation oncologist. But it can be ordered by your surgeon or your medical oncologist. If you have any questions, you can also call the company's Patient Care Team at 888-211-3247.
I want to first address the test I talked about (PreludeDX). It is used to forecast reoccurrence with and without Radiation Treatment. You have already had radiation, so it would not be used for decision-making but rather to provide helpful information. It's only done for DCIS patients like you and me, so you do fit the parameters for requesting this test. Knowledge is power!
"DCISionRT is easily ordered by your breast care doctor. An order request can simply be faxed by your doctor’s office to PreludeDx. Our Care Team will take care of locating your original biopsy or surgical specimen and provide results to your doctor within 2-3 days from receipt—no additional biopsy or surgery is required."
In my case, PreludeDX was ordered by my radiation oncologist. But it can be ordered by your surgeon or your medical oncologist. If you have any questions, you can also call the company's Patient Care Team at 888-211-3247.
I want to first address the test I talked about (PreludeDX). It is used to forecast reoccurrence with and without Radiation Treatment. You have already had radiation, so it would not be used for decision-making but rather to provide helpful information. It's only done for DCIS patients like you and me, so you do fit the parameters for requesting this test. Knowledge is power!
"DCISionRT is easily ordered by your breast care doctor. An order request can simply be faxed by your doctor’s office to PreludeDx. Our Care Team will take care of locating your original biopsy or surgical specimen and provide results to your doctor within 2-3 days from receipt—no additional biopsy or surgery is required."
In my case, PreludeDX was ordered by my radiation oncologist. But it can be ordered by your surgeon or your medical oncologist. If you have any questions, you can also call the company's Patient Care Team at 888-211-3247.
Hi, thank you for this reply, it is so helpful.
Yes I had 4 weeks of radiation with boost treatments at the end. The doctor did recommend AI which I've only been on for six weeks. Not sure how it will go, or how long I will be on them .
In retrospect if I knew them what I know now, I would have had a DMX and not had to worry about these AI side effects. I just thought stage 0 DCIS was an early catch and per mds would be fine.
I did take a test CTS 5 test meant for after 5 years AI treatment (obviously I just started AI) to assess reoccurrence 6% intermediate risk.
The Predict test excludes DCIS patients as you know, but I took it anyway.
You are right, the grade 3 of the 14 mm tumor puts me at a higher risk.
No one has a crystal ball but I sure would like to take the test you listed to really understand the risk.
I'm 68 my mom died at 74, I want to live my last years feeling good enough to watch my grandkids like I was and am doing.
I than God for this group as you all understand the unpredictable nature of our personal risk of reoccurrence.
Yes I did talk in depth with oncologist, who assures me we try this drug first, if problems occur, we try another.
Thank you again for listening and responding with pertinent information.
I wonder if I should still take the test above, even now after treatment (?)
@flowergal - I would like to address another part of your message now:
You say: "In retrospect if I knew then what I know now, I would have had a DMX and not had to worry about these AI side effects." However, taking AIs is NOT tied to having your breasts.
Cancer.org, states that Aromatase inhibitors (AIs) are "drugs that stop most estrogen production in the body. Before menopause, most estrogen is made by the ovaries. But in women whose ovaries aren’t working, either because they have gone through menopause or because of certain treatments, estrogen is still made in body fat by an enzyme called aromatase. AIs work by preventing aromatase from making estrogen."
Breastcancer.org describes the function of AIs as follows: "Aromatase inhibitors stop the production of estrogen in those who are post-menopausal and are mainly used to treat hormone receptor-positive breast cancer. Aromatase inhibitors work by blocking the enzyme Aromatase, which turns the hormone Androgen into small amounts of estrogen in the body."
Should it make you feel safer, remember that you can always go back for a double mastectomy. BUT is it necessary? Not so, if your goal is to stop taking AIs.
@flowergal - I would like to address another part of your message now:
You say: "In retrospect if I knew then what I know now, I would have had a DMX and not had to worry about these AI side effects." However, taking AIs is NOT tied to having your breasts.
Cancer.org, states that Aromatase inhibitors (AIs) are "drugs that stop most estrogen production in the body. Before menopause, most estrogen is made by the ovaries. But in women whose ovaries aren’t working, either because they have gone through menopause or because of certain treatments, estrogen is still made in body fat by an enzyme called aromatase. AIs work by preventing aromatase from making estrogen."
Breastcancer.org describes the function of AIs as follows: "Aromatase inhibitors stop the production of estrogen in those who are post-menopausal and are mainly used to treat hormone receptor-positive breast cancer. Aromatase inhibitors work by blocking the enzyme Aromatase, which turns the hormone Androgen into small amounts of estrogen in the body."
Should it make you feel safer, remember that you can always go back for a double mastectomy. BUT is it necessary? Not so, if your goal is to stop taking AIs.
Hi, thank you for this reply, it is so helpful.
Yes I had 4 weeks of radiation with boost treatments at the end. The doctor did recommend AI which I've only been on for six weeks. Not sure how it will go, or how long I will be on them .
In retrospect if I knew them what I know now, I would have had a DMX and not had to worry about these AI side effects. I just thought stage 0 DCIS was an early catch and per mds would be fine.
I did take a test CTS 5 test meant for after 5 years AI treatment (obviously I just started AI) to assess reoccurrence 6% intermediate risk.
The Predict test excludes DCIS patients as you know, but I took it anyway.
You are right, the grade 3 of the 14 mm tumor puts me at a higher risk.
No one has a crystal ball but I sure would like to take the test you listed to really understand the risk.
I'm 68 my mom died at 74, I want to live my last years feeling good enough to watch my grandkids like I was and am doing.
I than God for this group as you all understand the unpredictable nature of our personal risk of reoccurrence.
Yes I did talk in depth with oncologist, who assures me we try this drug first, if problems occur, we try another.
Thank you again for listening and responding with pertinent information.
I wonder if I should still take the test above, even now after treatment (?)
The test she is refering to is above. Just press the link and input your data. DCIS, grade 2, ect. And it will give you your stats. It is free and online. Hope that helps!
Wasn’t sure if understood so I am clarifying.
@flowergal - As you may expect, there are different opinions regarding the use of Aromatase Inhibitors following a Mastectomy. Generally, doctors will recommend AIs when only one breast is removed. But in the event of a high-grade type, HR+ cancer, they may recommend AI following a double mastectomy. I don't know what your oncologist may tell you. Since you have a very good rapport with her, I would ask her opinion.
In any event, remember that you have choices.
You may still decide to have a double mastectomy or not. You may still decide to continue taking AI or not. You may still choose to get a second, or third opinion, or not. These are all decisions you CAN make.
I would follow the advice of a doctor I trust; which is what you have already done, I believe? Perhaps, you are no longer sure and want to revisit your options with her? There is NOTHING wrong with that! A doctor who does not understand your need to re-address your options is a doctor you may want to change. Please don't be afraid to request an appointment to talk about your worries.
I know you are concerned about recurrences and not having enough time or strength for/with your family. You are not alone in feeling so. Many of us have in the past, are now, or may feel so in the future. It's worse when your own mother died fairly young.
A diagnosis of CANCER is scary, unexpected, and it takes your breath away. You are in the right place to connect with others who are not doctors but understand what you are going through. We all care and will be by your side through your journey.
Connect
Connect
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@flowergal - Sorry I am responding only today!
I want to first address the test I talked about (PreludeDX). It is used to forecast reoccurrence with and without Radiation Treatment. You have already had radiation, so it would not be used for decision-making but rather to provide helpful information. It's only done for DCIS patients like you and me, so you do fit the parameters for requesting this test. Knowledge is power!
"DCISionRT is easily ordered by your breast care doctor. An order request can simply be faxed by your doctor’s office to PreludeDx. Our Care Team will take care of locating your original biopsy or surgical specimen and provide results to your doctor within 2-3 days from receipt—no additional biopsy or surgery is required."
In my case, PreludeDX was ordered by my radiation oncologist. But it can be ordered by your surgeon or your medical oncologist. If you have any questions, you can also call the company's Patient Care Team at 888-211-3247.
HUGS!
D.
Thank you so much!
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2 ReactionsHi
Is this test only done in the states? Is it tge same as oncotype testing
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2 Reactions@flowergal - I would like to address another part of your message now:
You say: "In retrospect if I knew then what I know now, I would have had a DMX and not had to worry about these AI side effects." However, taking AIs is NOT tied to having your breasts.
Cancer.org, states that Aromatase inhibitors (AIs) are "drugs that stop most estrogen production in the body. Before menopause, most estrogen is made by the ovaries. But in women whose ovaries aren’t working, either because they have gone through menopause or because of certain treatments, estrogen is still made in body fat by an enzyme called aromatase. AIs work by preventing aromatase from making estrogen."
Breastcancer.org describes the function of AIs as follows: "Aromatase inhibitors stop the production of estrogen in those who are post-menopausal and are mainly used to treat hormone receptor-positive breast cancer. Aromatase inhibitors work by blocking the enzyme Aromatase, which turns the hormone Androgen into small amounts of estrogen in the body."
Should it make you feel safer, remember that you can always go back for a double mastectomy. BUT is it necessary? Not so, if your goal is to stop taking AIs.
HUGS!
D.
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Hug
2 Reactions@sue417 - Sue, where are you located?
D.
Hi
I am in sarnia ontario, canada
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3 ReactionsI see what you are saying, but as I understood it, a Mastectomy is usually not followed by taking AI's - is that not correct?
I appreciate your knowledge and am looking to educate myself more on this now relevant topic in my life.
Ty
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2 ReactionsThe test she is refering to is above. Just press the link and input your data. DCIS, grade 2, ect. And it will give you your stats. It is free and online. Hope that helps!
Wasn’t sure if understood so I am clarifying.
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Helpful -
Hug
1 Reaction@sue417 - Thanks, Sue; I will find out for you. I know they are in many countries, including Australia and Sweden.
HUGS,
D.
@flowergal - As you may expect, there are different opinions regarding the use of Aromatase Inhibitors following a Mastectomy. Generally, doctors will recommend AIs when only one breast is removed. But in the event of a high-grade type, HR+ cancer, they may recommend AI following a double mastectomy. I don't know what your oncologist may tell you. Since you have a very good rapport with her, I would ask her opinion.
In any event, remember that you have choices.
You may still decide to have a double mastectomy or not. You may still decide to continue taking AI or not. You may still choose to get a second, or third opinion, or not. These are all decisions you CAN make.
I would follow the advice of a doctor I trust; which is what you have already done, I believe? Perhaps, you are no longer sure and want to revisit your options with her? There is NOTHING wrong with that! A doctor who does not understand your need to re-address your options is a doctor you may want to change. Please don't be afraid to request an appointment to talk about your worries.
I know you are concerned about recurrences and not having enough time or strength for/with your family. You are not alone in feeling so. Many of us have in the past, are now, or may feel so in the future. It's worse when your own mother died fairly young.
A diagnosis of CANCER is scary, unexpected, and it takes your breath away. You are in the right place to connect with others who are not doctors but understand what you are going through. We all care and will be by your side through your journey.
HUGS,
D.
-
Like -
Helpful -
Hug
2 Reactions